This is Lupus

May is Lupus Awareness Month. I am very thankful and grateful that my disease is mostly well managed. I am fortunate to have an excellent Rheumatologist that knows what to look for and is on my side to help me live my best life.

Lupus has no cure, and like other autoimmune diseases, it can be very unpredictable in when and where it will attack. Somethings I have resigned myself to live with; back pain, hand pain, and chronic fatigue. This is daily for me, but when I have a flare, the pain and fatigue get to be debilitating. This weekend I had to nap 3+ hours on Saturday and Sunday. I slept through things I wanted to do, should have done, and spending time with my family. To me, the hardest part of this disease is not being present for my kids and husband. Every day I have to make a choice where to put my energy. Some days my body says No to everything and everyone.

I am not writing this looking for sympathy. There are a lot of other autoimmune diseases that people have and are doing a pretty good job of hiding. I am writing this for understanding and patience for those of you that love someone with lupus or similar. They don’t mean to skip out on you. They want to be invited places even if they cancel at the last minute. Also, never take your health for granted. So eat well and get some exercise for your body’s sake! Take care of that healthy body, do it for those of us who’s body sabotages itself!

Thank you!

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Why I am No Longer a Pessimist

“Don’t call me Naomi,” she told them. “Call me Mara, because the Almighty has made my life very bitter.” ~ Ruth 1:20

Naomi means pleasant. Mara means bitter.

When I read that, I told my closest friends I felt like I should change my name to Mara and wear a scarlet B on my clothing, like in The Scarlet Letter. I didn’t need to wear a ‘B’ it was evident in my demeanor that I was bitter.

When I think back to my attitude several years ago I just want to apologize to everyone I knew at that time. I can hardly bear to remember how bitter, pessimistic and depressed I was. I would not want to be around me. I could not see anything positive at all. I was stuck. And worse, I was convinced that my life would never change, that it would never get any better. Thank you to those who stuck by me in my season of despair.

I wish I could say that I saw the light and snapped out of it quickly. I did not. My journey through bitterness lasted years. I read a few really good Christian books and went through all the old counseling material that I had from my counselor several years prior to try to make sense of my feelings. I prayed and prayed for God to take away the situation, to move me, to make it better. Nothing changed and I sank further away. My mind kept telling myself that what was in the books and even the Bible didn’t apply to me and good things were for everyone except me. I felt pretty hopeless. One day God spoke to me in his very quiet way and told me to accept it and stop fighting.

Here I am thinking why on earth would God tell me this? What kind of crap life has God destined me for? Why?? Where was my Abundant Life?? Accept it and stop fighting? I was not exactly jumping for joy. Accept it and stop fighting… At this time Ann Voskamp’s book One Thousand Gifts: A Dare to Live Fully Right Where You Are came out. I don’t remember how I heard about it, but the title intrigued me. Her style of writing is rather poetic and I had a very hard time getting into the book. But the gist of it was to find something to be thankful for, no matter how small. I started to take this to heart. I had also started running around this time too. My story is HERE. I distinctly remember seeing a wildflower (or weed, depending on how you look at it) blooming in horse crap. This is where my slow transformation began. I saw a poor flower surrounded by thorns and crap and felt sorry for it. But friends helped me see for the first time that God wanted me to shine no matter where I was or whatever my circumstances were. He wanted more from me and for me. He wanted me to be content no matter what else was going on around me.

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God wanted me to see that He was all around me. I started to notice little things – the sunlight catching a tree branch, birds singing. God used these little things to bring himself to the forefront of my mind. I started to focus more on him. I started to see what was true, noble, right, pure, lovely, admirable – whatever was excellent or praiseworthy – God called me to think on these things. (Phil 4:8)

This was a long process for me. Years. I struggled with my old self and the natural tendency of my thoughts to go to the negative, and to think the worst and my new self that I was becoming, a supernatural changing of my thinking that maybe things weren’t as bad as I thought, that there was some good not only in the world, but even in my own circumstances.

You were taught, with regard to your former way of life, to put off your old self, which is being corrupted by its deceitful desires; to be made new in the attitude of your minds; and to put on the new self, created to be like God in true righteousness and holiness. Ephesians 4:22-24

God was changing my attitude in my mind. Slowly but surely there was a change, and it is still an ongoing process. But I had to let go. I had to accept it and stop fighting. And when I finally started to really live this, that is when God changed my circumstances, that is when he moved me. I have days where I struggle and don’t want to fight for joy, but I don’t stay there anymore. God truly has changed me. Hallelujah!

If you had asked me 5 years ago if this was possible I would have said no. But here’s the crazy thing. If God had answered my prayers the way I wanted back then, to move me, change my circumstances, etc. I would have never become who I am today. I would still be fighting any uncomfortable situation and see things negatively. In His love and mercy, He patiently walked me through this process. I wish I was a faster learner.

If you are struggling to see any light, any change, any hope – please don’t give up. God does want more from you and for you too. Turn your eyes to him. Find something no matter how small to be thankful for – the sun peaking through the clouds, the smell of brewing coffee, a really hot shower, your car that gets you places even if it’s not pretty. These are good gifts. Take notice and give thanks.

Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like the shifting shadows. James 1:17

Paul tells us the secret of contentment in every situation is Christ in him. Phil 4:11-13 It is not easy nor come naturally, but with Christ, we can find contentment. He loves us too much to give us everything we want because he knows exactly what we need.

 

Guilt, Pain, and Spoons

I haven’t written in a long time. I haven’t run in a long time either. I feel like I haven’t done much except exist in a long time. I have been wanting to express my thoughts for some time now, but I haven’t been able to formulate sentences beyond what is necessary  until recently. So you might guess that I was feeling bad, but am now feeling better. Somewhat. But that is too simple. Here’s the thing – there are thousands of people that are like me – functioning, but not fully functioning. People with Lupus, Rheumatoid Arthritis, Fibromyalgia, Hashimoto’s, Sjogrens, etc, etc, etc. Some people have a diagnosis. And so many more people do not. They have no idea why they are “not up to par” as I would say about myself.

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I want to talk about guilt.

I love my job. It suits me well. But, when my body is flaring on the days I work, that’s where all my energy went. I have nothing left to give the people I love the most, the people I care about the most. That makes me feel guilty. Especially knowing who might read this. My kids are growing up so fast and will be out of the house within a couple of years. I feel like they have not gotten the best of me, I hate this. My husband gets the least of me. How will this impact our marriage down the road? Friends? I just trust that the good ones will still be there.

People with autoimmune disease sometimes throw around the term ‘Spoonies’ because of the Spoon Theory that Christine Miserandio came up with to explain what it’s like to live with Lupus. Each task one must do each day takes a spoon. A healthy person has an unlimited supply of spoons, while one with a disease only has so many. We have to think carefully about what task we must do each day before we ‘run out of spoons.’ This includes getting out of bed, taking a shower, any housework, writing a blog post, going to work, getting gas, going to the grocery store, going to church, etc. My husband doesn’t understand why I don’t take a shower everyday. He asked sincerely, doesn’t it make you feel better? The answer is no, it takes so much energy to get in and hold up my arms to wash my hair. I am more tired after a shower. Every little task is something that can be overwhelming to me.

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I want to talk about pain medication.

Not everyone on pain meds is an abuser or faking it. Here’s the thing about pain medication. It masks it. It doesn’t take it away. Any pain medication strong enough to take away the pain, also takes away the ability to think clearly. So most of the time my pain is a 3/4 on the pain scale. When it goes to 5, 6 or 7, I take something that brings it down to a 3/4. Any more than that, I may as well sleep. And what good does that do when you want to be a functioning member of society? Massage helps. But it doesn’t last. And insurance (at least mine) doesn’t cover it anyway. CBD oil was like taking a whole bunch of money and flushing it down the toilet. Tequila is nice for an hour, then I just feel sick. So I live with chronic pain. Running helps. Eating right helps. Massage helps. But each of those things takes a spoon. I only have so many. I have to choose between what would be really good for me and the stuff that has to get done. That is why I don’t always shower or stretch and do exercises because I have to do laundry because there is nothing left to wear, and go shopping because there isn’t food in the house, or go to work, because it’s time to go to work.

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I don’t want this to be a whiny post. I want it to be for people who can say, yes, that’s me. I am not alone. And for others to say, oh, I didn’t know.

I get it, I don’t look sick. I do a lot. I run many many miles and it helps me to feel better and in more control. I smile at work and shake hands with people and help them to help themselves. I coach others to find the joy in running and make it a lifestyle because it is SO SO good for people mentally as well as physically. I do all these things and I have a genuine smile, somewhere, deep down.

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I just want people to know there are many many people that are having a tough go of it. Be nice. Be kind. Be understanding. Be gracious. Be helpful. Be generous. Be loving. Be forgiving. Be patient.

 

 

Palo Duro Trail Run Race Recap

On October 20, 2018, I ran the new PDTR 50 mile course. This is the first year to incorporate some new trails and they did not disappoint. I ran the 50K in 2016 so I knew that the new trails were going to add a new level of difficulty. For my first 50 mile run, I wanted to stay local because I know so many of the volunteers and other runners. It was so helpful to be hugged and encouraged by so many friends who knew the doubts I had before the race.

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The old course for the 50 mile race repeated figure 8 loops 5 times. The new course is 3 25K loops plus an added on section to the first loop to make 50 miles. Our area had much needed rain in the two weeks leading up to the race and many of the trails flooded. It took a lot of man power and volunteers to clean up debris, repair bridges and get water off the trails. Hat’s off to the Race Directors for getting it done!! There was too much water in the lower section of the 50 mile add on loop they had to change the course for us. We repeated the small section and looped back to the start/finish and then did the 25K loop 3 times. A little more challenging as far as technicality goes, but you need to be flexible when you run ultras.

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Race day the weather was predicted to start in the low 40’s and have a high of around 70 degrees which was pretty much what it was – just about perfect weather!! Not too cold and it certainly did not get as hot as the last few years, thank God! The 50 milers had a 15 minute head start because of the course change. We were going to start with the 50K, but since we were making a little loop back to the start finish, they needed us to be through there before the 25K started.

There were 27 50 milers. I placed myself near the back and the runners started to separate quickly on the single track. I was with a group of 6 other runners and we chatted and found out this was the first 50 mile race for all of us. Being very dark, we helped each other out by calling out “water” or “flag” so we knew what was ahead. As we neared the spot where we turned to go back to the start/finish a few people had taken a wrong turn. I knew right where we were, so I led us back to the start/finish so we could begin our first of three 25K loops. It was fun to run back through because all the 25K runners were ready for their start so we had 400+ people cheering for us! I didn’t need my headlight anymore, so I took it off and got my hat out of my drop bag, slathered on some sunscreen and took off.

Soon the fast 25K runners caught up to me and I saw some friends that were running it. I took my time, got some high fives at the first aid station and started the climb of Comanche Trail. I had run this trail a few times in my training and new I would be power hiking (aka walking) parts of it. The sun started to come out and I stopped to take a few pictures. Palo Duro Canyon is such a beautiful place! I realized I didn’t grab my sunglasses and would have to wait another 10 miles before I hit my drop bag again, but at least I had my hat.

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I was fueling with Honey Stinger gels and Untapped Coffee Maple Syrup, Coke at aid stations and just the water in my hydration pack. We had a slight breeze in the morning so it didn’t feel too hot as the sun heated up the canyon. I made it back to the start/finish right at 4 hours, which is where I thought I would be, grabbed my sunglasses, repacked my vest with more gels and had some boiled salted potatoes at the aid station and took off for lap #2. I settled in with 3 other runners for the climb of Comanche again and we all talked about the course, running back ground, where we lived, family, etc. Funny how easy it is to talk to strangers when you are all running! I love that part of it. I figured the second loop would be the hardest mentally, because the third loop would just be all heart, plus I knew my son was going to pace me for part of the last loop.

I ran into more friends at the aid station and we hugged and chatted some, but I knew I needed to keep going, as I was slowing down a bit more than I wanted. I ran the back half of the 2nd loop better and made it back into the aid station close to where I wanted to be. My family was waiting for me and that was awesome!! By now I was really feeling the effects of 35 miles and my knee was getting very cranky. My stomach was a little queasy, but my coach had told me when that happens you aren’t eating enough. So I sucked down another gel even though I didn’t want to. I hobbled out of there with my son Aaron and we did fine until that final Comanche climb! I walked way more than I wanted to. Aaron was helpful in taking my mind off the run and the pain. We got to Rock Garden aid station and my husband was going to run 3 miles with me to Capitol Peak aid station. I was not feeling great and was getting worried about the time cutoff. I knew if I kept slowing down I wouldn’t make the 12 1/2 hour time limit so I would take a deep breath and run. Derreck decided to run the 3 mile Capital Peak Trail with me, since I was going so slow and needed that push. Thanks to another 50 mile runner, I took an aspirin and wow, when that kicked in I could run again, really run! I couldn’t believe the difference it made and now I know to pack that too!! Aaron met me at Lighthouse aid station and was going to run the last 3.5 miles in. Now I was actually running, plus this is a really runnable section, and he pushed me down to my fastest miles! HA! I felt great!!

I saw the finish line flags and was so happy! The crowd had dwindled way down by now so there were not too many people there to cheer, but it didn’t matter -my family was there! My boss (co-race director) also gave me a big hug and that meant so much to me. I really look up to her as a runner. It’s still kind of surreal that I completed 50 miles. I am so thrilled that my body held up, I did not go into a lupus flare afterwards, and yes, I was sore for 2-3 days, but after that I felt great. I finally stopped eating so much! I was very hungry for several days afterwards. I am looking forward to the next big running adventure!

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Stats:

27 started, 12 were women and only 7 women finished. I was 4th female in a time of 11:38:44. Top female finished in 9:32:14!! Top male finished in 7:50:38!! Amazing.

I ran in Hoka Torrent shoes, wore Injinji socks with Zensah socks over, and used Nathan Vapor Airess hydration pack. I had 2 small blisters in my normal spot on my feet and no chaffing or any other problems.

My training plan and coach: Stephanie Howe Violett and the Train Like A Mother Club from Another Mother Runner. The program was amazing, the plan was perfect for me, the encouragement and advice from the others in the program was awesome. Highly recommend this group for your first Ultra.

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50 Miles?!?! But First…

A year ago I had planned to run the Palo Duro Trail Run 50K Race but my mom had some serious complications from heart surgery. I skipped the race and flew to PA to be with her and my dad. She had a tough road ahead of her but she is much tougher than she thinks. I’d like to think that I get my strength and toughness from her, but we both really know that we are just plain stubborn. One thing about my mom, she is who she is. There is no pretending, no sugar coating, no beating around the bush. I used to be a little embarrassed sometimes, but now I embrace it and am glad when people say I take after her. When you are confident in who you are, your values and world view, you can truly be just you. I love that mom has shown me how to just be me without excuses or apologies. I am not intimidated by people or challenges, I just take a deep breath and press on.

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The best thing I got from my mom is her example of her faith in Jesus Christ. She lived out Deuteronomy 6:4-9 for me as a child and continues to do so.

Hear, O Israel: The Lord our God, the Lord is one. Love the Lord your God with all your heart and with all your soul and with all your strength. These commandments that I give you today are to be on your hearts. Impress them on your children. Talk about them when you sit at home and when you walk along the road, when you lie down and when you get up. Tie them as symbols on your hands and bind them on your foreheads. Write them on the doorframes of your houses and on your gates.

No parent is perfect, but seeing my parents now, how far they have come, how God has changed them and transformed their marriage is a miracle. All glory to God!

All Glory to God for giving me my parents and family, our struggles, our growth, our character, talents and gifts. Depression and autoimmune diseases do not define me. All of these things are known by God and He is not surprised by anything. I can have confidence in Him!

Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. Phil 1:6

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In my last blog post I shared how scared I was and really unsure if I could complete the 50 mile distance in the time allowed. There was a point at mile 42 where I wasn’t sure if I could, but my family came aside me and ran with me for a few of the last miles to keep me moving. My son and my husband were a tremendous help in keeping my mind off how much I hurt. Aaron made me laugh and Derreck told me he loved me but I had to keep moving. I was tired, but I never even thought about quitting.

At the last aid station I had 3.5 miles left to go. The volunteers at all of the aid stations were so encouraging and helpful. The best part of running a local race is knowing so many of the volunteers! They greet you by name and give you a hug and save you potatoes with salt because they know that’s what you like! Thank you to every single person who spent their day in the Canyon to help runners meet their crazy goals. And a huge thank you to my boss who is so inspiring and gave me wonderful yet simple advice, “Just don’t stop.”

Palo Duro Trail Run does not disappoint. It is a challenging, yet runnable course in a beautiful setting. The race directors work tirelessly to ensure a great race for every runner and make each person feel like a winner.

 

Run with Endurance

As of today, I will be attempting to run 50 miles at the Palo Duro Trail Run in 10 days. I would be lying if I said I wasn’t scared out of my mind. But I am also excited to test the limits of my endurance. I have been increasing miles and pace over the last 6 years because it’s fun to see what I can do, it makes me happier, it makes me feel better mentally and I simply love running. In 2009 when training for my first 5K in years, I wanted to make 30 minutes. I didn’t, but that is what spurred me on to really run. The following year I knocked over 5 minutes off and ran it in 27 something. My PR is 24 something that I got 2 years ago at a turkey trot! In my first half, I wanted to break 2 hours. I trained on my own and did it! With 30 seconds to spare. In my second one, a year later, I hit 1:52, quite a difference! In my first marathon, I was shooting for 4 hours. Considering I was sick with the flu for 3 weeks prior to my race, and I did make some rookie mistakes (starting too fast, maybe?!?!) I ran it in 4:15. My second one, less than a year later I wanted to qualify for Boston. In 2016, I did, running 3:53 something! When I set my mind to run a certain distance or time, I am pretty determined and have been able to achieve my goals. When wanted to run a 50K, I thought, yes, this is harder and longer, but I can do it. I trained and have since run 3 50K’s. Everything I have challenged myself with so far, though hard and I worked for it, I knew I was capable. So here I am, 10 days out from 50 miles and this is the first time in my running that I am unsure of the outcome. I truly do not know if I can complete this distance a) at all, and b) in the 12 hours and 30 minutes allowed time. On paper I can. But this is so much further than anything I have attempted to run, so far away from any previous time on my feet that I really don’t know.

My Bible study this week has been on suffering. How appropriate, as ultra runs are often fondly called “sufferfests” among other things. The Bible has a lot to say on suffering. Most often, God does not take suffering away, but promises to be with us in it. I will definitely be holding onto this thought as I know I will be suffering. Why willingly put myself through the physical pain of running? Training and running long distances correlates to my walk of faith. …Let us lay aside every weight and the sin which so easily ensnares us, let us run with endurance the race that is set before us. I pray I will see God beside me when I am weary. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ. Vaneetha Rendall Risner said in a Desiring God article “Suffering has a unique way of putting me in God’s presence, beholding his glory, because I am constantly crying out to him.”

I know non-runners do not understand this and question me. I also don’t understand at times either. But I do know that running connects me with God. There is something about the rhythmic movement of running, of feeling the breath in my lungs, and being outside that puts me in God’s presence like nothing else does. It might be its simplicity, or that there aren’t other distractions.

I am imagining myself at the start line. It’s dark, there is a buzz in the cold air. I see my breath. Headlamps are shining, people are laughing nervously. I smell someone’s coffee. I smile, praise God that I am here, wait for the bagpipes to play. It’s time! I take off, at a slow jog, it is a 50 mile race after all. I see the trail of headlamps ahead of me, adjust my pack and settle into my pace. I see myself as the sun starts to peak over the canyon walls and smile, that’s God winking at me. I run on and eat a little fruit at an aid station and take my gel, Untapped Coffee Maple Syrup and am thankful such a thing exists. Before I know it, I have completed loop 1, 20 miles. I see my husband and he refills my pack and takes care of anything I might need. He sends me off with a kiss and…

Tune in to the race recap in a couple of weeks!

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Faith Over Fear

Why would anyone run that far?

I don’t even like driving that far!

Aren’t you worried you’ll ruin your knees?

No, other people aren’t saying this to me, I am thinking it myself. I am in the middle of training for my first 50 mile trail race. It is daunting at best and absolutely terrifying at worst.

I am extremely fortunate that all medication is working fairly well; lupus and Hashimoto’s are well managed except for the sun sensitivity that I now experience. I am in a very healthy place for me right now and am so grateful that I even get to train at all. No, it’s not what I used to be able to do, and it is so much harder than it used to be. I let fear and doubt take over because I overlooked how far I have come since my diagnosis. My training runs had been miserable, mostly because of my bad attitude. ‘Why try this at all? I probably will DNF anyway, imagining that I won’t make the time cutoff.’ and other negative self talk polluted my thoughts.

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Feeling defeated.

My family took a little weekend away to the Taos Ski Valley and hiked up Wheeler Peak. That was not only a perspective and altitude change, but a mental change as well. No running. Just hiking with the family, climbing about 3000 feet in elevation to the peak at 13,160′ and enjoying the views! It was physically so hard because of the elevation and steep grade, but when we all reached the top, it was such a relief and sense of accomplishment. I thought, if we can do this, I can do the 50 mile race.

My latest 16 mile run was done on the trails on the day after a 10 mile run which was on the day after a 13 mile run. Tired legs. Good gage of how the race might go. I felt better than I have felt in a long time. My pace was slow, but hey, it is what it is. (I need to let that go.) I kept a good attitude and knew I could continue on. This run gave me some confidence back. I can’t help but think that when God prompted a person to scratch something in the dirt, He knew I was going to see it and I know it was a reminder for me.

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Amen.

Now faith is being sure of what we hope for and certain of what we do not see. Hebrews 11:1

I need to keep the faith. Trust my training. This goes not only for my race plan but my life plan. I need to remember that whatever I am facing, faith is stronger than fear. Faith will overcome fear! Fear can paralyze you, faith can set you free. By trusting in Jesus I can rest assured that no matter what, He’s got me. So I can rise up to challenges with a strength and resolve from above. And if I do end up with a DNF, it won’t be because of fear.